Wednesday, 27 February 2013

I post gluten free and lactose free recipes on this site, and sometimes people ask what being gluten free does for my lupus, and whether I think it would help them.

Second question first. I have no idea if it would help you. If you have symptoms similar to mine, it might be worth talking to your doctor about trying it.

Now the first question, how does it help me?

All my life I've struggled with reflux and Irritable Bowel Syndrome. (When I was diagnosed with lupus, my rheumatologist told me "reflux" and "Irritable Bowel" were terms that actually mean "we have no idea what's causing this.")

Reflux upsets the top bit of the digestive system. Stomach acids get into the oesophagus, causing nausea, pain (at times so intense, I've been rushed to hospital with a suspected heart attack), and a constant feeling that I'm hungry, leading to binge eating.

One of the things which has contributed to my reflux is lactose intolerance. My body doesn't make sufficient lactase enzyme, so I can't digest lactose (the natural sugar in milk.)

Giving up lactose helped to settle reflux. It hasn't stopped it all together. I still take medication for it, and sometimes it still bothers me. But without lactose, it's not so bad.

I haven't had to give up dairy products. It's now possible to buy milk and cream that have had lactase enzyme added to them to break down the lactose. Yoghurts and cheeses already are made with enzymes that break down the lactose in the process of converting milk to yoghurt or cheese.

Further down the digestive system, Irritable Bowel Syndrome causes bloating, flatulence, alternating constipation and diarrhea, very unpleasant. I've struggled with it my whole life, but it has been getting steadily worse. A year or two ago, my GP suggested I try going gluten free to see if it made a difference. It made a huge difference, almost immediately.

Reflux and IBS are just something that goes with lupus for a number of us (but not everyone, because lupus has so many variations that no two of us seem to have exactly the same issues.) For me, cutting lactose and gluten from my diet has helped me to manage these very symptoms.

I can't guarantee it would work for everyone. But I post recipes now and then because, I know that some other lupies have found it helps them as well.

Tuesday, 26 February 2013

It's a reminder for people with lupus, and other conditions that compromise our immune systems, that we have to be careful of things other people don't worry about. Public health authorities may publish lists for pregnant women about the foods they need to avoid, but how many autoimmune patients are given copies of these lists?

Understanding the recent listeria-linked cheese recall

By Tom Ross, University of Tasmania
Soft cheeses made by Jindi were recently recalled in Victoria, after they were linked to the deaths of three adults, a miscarriage, and a score of other cases of “listeriosis”. The case is a reminder of the need for public health authorities to be vigilant about educating at-risk people about this disease and for the food industry to minimise the risk from contaminated food.

Deadly disease

Listeriosis is almost always acquired by eating contaminated foods. While listeria monocytogenes are quite common in the environment (and at low levels in many fresh foods), the disease itself is rare. There are about 60 reported cases a year in Australia, and that rate is similar to other developed nations, although it’s possible that as many cases again go undetected.

If detected early enough, infections can be treated successfully with antibiotics. Despite being uncommon, listeriosis is very serious and will be fatal for 20% to 30% of infected people. This statistic is repeated in the current outbreak, which has seen four deaths out of about 20 cases.

Listeria monocytogenes is harmless to most people, even when ingested at high levels. Many of us will have the bacteria in our guts at some time and they usually pass through without harming us. People at high risk are those with reduced immune function, such as those on drugs to stop rejection of an organ transplant, or to control an autoimmune disease, such as lupus, those receiving anti-cancer treatments, the aged, those with diabetes, liver or kidney disease, and the unborn or very young babies.

Indeed, a person with liver cancer is nearly 1000 times more likely to get listeriosis than a healthy young adult, while pregnant women and their foetuses are at about 100 times greater risk. Virtually every person who gets listeriosis has some underlying condition that predisposes them to infection.

If people susceptible to listeriosis ingest a large amount of listeria, some may cross from the intestine into the cells of the body, where they can “hide” from the immune system. They then increase in number, moving from cell to cell, and spreading to susceptible sites in the body, where they cause damage to host cells. This results in disease symptoms. The most common sites of overt infection and damage are the central nervous system and the uterus of pregnant women and foetuses.

Mitigating risk

Health authorities have produced information pamphlets for pregnant women to alert them to the risk from eating certain foods, while also giving advice about alternative foods to meet nutritional needs. Such advice is equally relevant to people with reduced immunity.

Since listeriosis was first recognised in the 1980s as a food-borne disease capable of causing outbreaks with deadly consequences, research has shown how best to reduce the risk. Listeria is common in nature, preferring moist habitats where there’s decaying organic matter, such as rotting vegetation. Unusually among bacteria that can cause human infection, it can grow at refrigeration temperatures and tolerates quite salty conditions. As such, it can grow in foods that have traditionally relied on added salt and chilling to extend shelf life.

Some of these foods allow listeria to grow to dangerous levels, albeit slowly. Foods most at risk of transmitting listeriosis are those that have a long shelf life but that still require refrigeration, such as “ready-to-eat” processed meats (for example ham, cold meats and paté), cheeses (particularly soft, surface-ripened cheeses, such as Brie, or Camembert), smoked fish and other lightly preserved seafood, and some types of pre-prepared salads.

Listeria’s lifestyle means it likes to set up house in food factories, because they often have nooks and crannies that are cool, remain wet and have traces of food to sustain populations of the bacteria. For the food industry, understanding that lifestyle has led to increased vigilance and steps to prevent listeria from becoming established factories, to detect it if it has, and to prevent if from contaminating foods.
This increased vigilance has also meant that potential problems are more reliably detected before contaminated foods are released or people become ill. Foods are also sometimes recalled to minimise risk to consumers.

Tom Ross receives funding from Meat and Livestock Australia, and NZ Ministry of Primary Industries.
This article was originally published at The Conversation.
Read the original article.

Additional Information

Since the link to this post was posted on the Sometimes, it is Lupus Facebook page, there have been a couple of questions about where to find lists of food which people with chronic illnesses should avoid. There are some links below to Queensland Health Fact sheets about food safety. Because of our compromised immune systems, we're best to assume that anything that could be harmful to a developing foetus (whose immune system isn't fully developed) could also be harmful to us.

Saturday, 23 February 2013

I did this cake for a small boy's pirate-themed birthday party. It is gluten free and lactose free, but is not suitable for anyone with a nut allergy. When you make it, allow lots of time for chocolate to set - I made the chocolate decoration days ahead of making the cake.

To find a good picture for the decoration, I did an internet search for colour-ins on my theme.

This takes a bit of time, but the result is a very yummy cake!

To melt chocolate: break intosmall pieces, and place in a bowl.Put bowl inside a larger bowl of hot water.Do not allow any water to getinto the chocolate.

Friday, 22 February 2013

My eyes have been a problem for years, a problem that just doesn't seem to be getting any better. That's not my vision, or the concerns about plaquenil possibly causing eye damage, but just the basic dry eye problem lots of lupies have.

Healthy people have eyes that stay moist. Tear ducts produce fluid, and there's also an oil produced by the eyelids. An optometrist told me last week that my pores which produce the oils in eyelids are completely closed. I know my tear ducts do produce fluid if I actually cry, but they're a bit slow to do their job just normally.

I've tried lots of products to keep my eyes moist, from artificial tears through to a thick gooey gel known as polygel (sounds like something related to polly filler or something else you'd use in building rather than something to stick in your eye.) At the moment I'm using Cellufresh eye drops, simply because they are covered by the Pharmaceutical Benefits Scheme, and cheaper with a prescription.

One thing the optometrist has suggested I try is to very gently massage my eyelids, to try to encourage the natural oils. Thinking of the number of times people have told me not to rub my eyes, it's strange to have a professional tell me that's exactly what I need to do. But, trying it, it does actually help a bit. I don't see it replacing the eye drops, because massaging my eyelids without using the drops first just scratches, but it does provide a little extra relief in addition to the drops.

Thursday, 21 February 2013

Sometimes, the only way to achieve something is to set a definite goal - not just, I will do better at something, but that I will do something I can measure to know I've achieved it and set a time limit.

Once I moved, and realised I could at last afford my rent, and not keep getting further into debt, I looked at my finances. I have a plan now to be out of debt by the end of 2016. That's without missing out on anything I really need, and starting to save to cover anything unexpected.

To do that, I've had to sacrifice some things that I know I can live without, for example, I've dropped the hospital cover from my health insurance, and now only have extras cover. If I need hospital care, I will go to the public system. Throughout my adult life, whenever I have had enough income, I have private health insurance, otherwise I have counted on the public system. To me, it's an ethical choice, if I can afford a private hospital, I'll leave a space free in the public system for someone who really needs it, but when I can't afford the private system, I don't feel guilty about taking my place in the public system. I've been a patient in both, and have to say I've actually found the public system far superior.

I'm also saving money by simply spending more time at home, eating all my meals here, inviting friends here for coffee instead of meeting them out, and not using the car as much.

There's another goal I needed to set, and absolutely must achieve. With continual reminders from my doctors about my weight, and now not needing to escape my home to get out of the heat constantly, I can start to address the basics of food and exercise. It's time to set the weight goal as well. I will be a healthy weight (for me, that's the range between 52kg to 62kg) by the end of 2016. Again, that's enough time to allow for some setbacks, lupus flares, etc.

My plan is quite simple. I need to go back to calorieking.com.au and follow the program carefully. I need to make sure I know what I'm eating and how much, and that I'm doing sufficient exercise. Because the flat is cooler and more comfortable, I'm able to spend the time in the kitchen to cook healthy meals.

I've started to exercise, with a daily walk around the block with my old dog. (Calorie King also counts housework as exercise, so that also contributes.)

Three years seems like a long time, but with both of these goals, the only way to achieve them is the long, slow, way. And the time to get started is right now.

Wednesday, 20 February 2013

Since the start of this latest flare (did it have a start?) I've been feeling unlike myself.

At first it was mega brain fog. I didn't know who I was and what I was doing most of the time.

Then there was the chaos of moving house. Somewhere in that my brain started functioning at a basic level again, which was probably good in the circumstances.

After the move, I've been exhausted and sore.

But, I've had patches of being back to my "normal" self.

I've done some exercise, not as much as I used to do, but I've been taking my old dog for short walks on the days it hasn't rained. I did ten minute yoga sessions a couple of times. (It was beginner's level yoga, bending only a very little bit, and still accompanied with loud crunching and cracking sounds.)

On Sunday, I had a fantastic morning. I haven't gone back to leading complete worship services yet, but we had two gorgeous children to be baptised, and I did that section of the service. It felt so good to be doing that, and I felt so well, I was starting to think maybe I was ready to go back to ministry part-time. Then I got home, fell into bed, slept a couple of hours and woke up in agony.

So I'm not ready to go back to work yet. But it's a good sign. As my doctor said this morning, "It's good that we're getting glimpses of you again." Of course she also cautioned to keep taking things very slowly.

For now, those glimpses of me are very exciting. Those couple of times when I get to feel well again are just amazing.

Friday, 15 February 2013

I have found a particular lupus support group to be an absolute blessing. It's just people with lupus, and sometimes some of their family members, getting together for lunch from time to time, and supporting each other on-line.

For me the opportunity to spend time with people who "get it", who just understand what it is like to live with lupus without me having to explain anything is a joy. Through this group I've met new friends who I basically only know on-line, but who have become incredibly important to me. These people who mostly live in my computer, but who I sometimes have lunch with, have become an essential part of my support system.

I know someone, however, who was very frightened when diagnosed, and didn't feel this group supported her at all well. She needed some sort of professional support group - a counsellor or nurse to explain to her what lupus was and what she could expect. A group of people who were all sick, and not necessarily available in office hours or some other set regular time, and without the wanted information at their fingertips, just wasn't what she needed.

Obviously, not everyone needs the same things when it comes to support.

We all need some amount of information. When I was first diagnosed, I did my research, the same as I researched for news stories as a journalist, or for essays as a student, or for sermons as a minister. I got hold of relevant information in books and on-line. I read the research, and found out the information I needed. Not everyone has training and experience in research.

If you're not used to finding information, there's some basic places to look, over on the Lupus Links page. To find reliable information, go to the Medical Information section, and look especially at the government sponsored sites. That's your starting point. If you want to know more from there, see what links those sites give you. You can also write a list of questions for your doctor. Remember that lupus is a very strange disease, not everyone will get all the symptoms, not everyone will have the same severity of symptoms, and probably no-one can predict exactly what your lupus will do.

If you're like me, you'll need to have someone to talk with who understands what it's like. On the Lupus Links page, you'll find some support groups, there will be lots more out there, this is just what I found in a very quick search of the net, with additions made as I've heard about other groups. Support groups vary. Some are large enough to have a professional staff. Many others are more like the group I'm a part of, just lupies doing what they can (each within their own limits) to support each other. If you don't find a support person or group which meets your needs, ask your doctor to refer you somewhere appropriate. It may be that what you really need as a psychologist or counsellor to help you deal with just how much your life is changing.

You can also find support on social media sites - and I have a few of those links listed as well. If the first site you try doesn't suit you, don't give up, and don't assume that makes the site "bad" it just means it's not for you. Try another site, eventually you will find what you need.

And there are blogs like this one - and you'll find a number of them on the links page as well - people who have lupus sharing what that means for our everyday lives. With blogs, bear in mind that the reliability of information varies wildly. Don't try to count on them for medical information. Patient blogs are more about awareness and sharing of personal experience. Use them to remind yourself that you're not alone, to see how other people solve some of the problems you face, even to take the time to have a laugh at your situation.

If you've found a really great source of support, I'd love to hear about it. Please leave a comment on this post, or on the Sometimes, it is Lupus Facebook or Google+ Pages.

Australians are famous for betting on anything at all. So, although I tend to avoid betting, I ought to come clean in case anyone had bets on how long my new, healthy, habits would last. It was two days.

What happened? I got tired. It was too much once I added in some of the basic elements of normal life, such as getting groceries, having friends visit, going to church, things that really aren't all that unusual.

I haven't given up completely. My old dog and I are still having a walk in the afternoon. It's not as much exercise as two walks a day, but he got tired after a couple of days of having morning and afternoon walks as well. Neither of us is as fit as we'd want to be.

Please don't get me wrong, I still hope to hold together all the elements of a healthy lifestyle I had begun - I'm just not doing everything every day. I'm still making use of my system I developed to clean the flat in 20 minutes - I'm just doing it a couple of times a week instead of daily. I'm still keeping track of what I eat, and trying to make healthy choices. And I've reinstated my afternoon nap, having realised it's a necessity.

To other lupus patients, don't be discouraged because I had to pull back a bit. It's all a matter of balance. We can take care of ourselves, we just have to find a balance between resting and getting things done.

Designs by Iris exclusively features my original patterns, handmade fiber art supplies, yarns and original, one of a kind hand knitted or hand crocheted items and soothing rice packs. I also have an extensive line of jewelry including earrings, necklaces, bracelets & more. All designed by me, Iris of Warm 'N Fuzzy Fiber Arts, a professional fiber artist, jewelry designer with over 35 years experience. Due to a problematic and painful shoulder, I will not be taking on any custom orders for the time being.Pattern copyright information is detailed in the Studio Policies section - please read before purchasing. Want to get to know the artist? Come chat with Warmnfuzzy on Twitter!

Saturday, 9 February 2013

One of the good things about a new home, is that it means a chance to start everything new.

I have to confess that over the past few weeks, through the move, I have not been taking very good care of myself. Now that almost everything's unpacked, and organised, it's time to look at that and start to initiate some new, healthy habits.

A few years ago, my dog and I used to go for long walks morning and evening. Then we both developed too many aches and pains, and I just let him have a wander around the yard for his exercise. We don't have a lot of yard space here, although I do have a little doggy play area for him. So we're back to walking - morning and evening, just around the block. It's an amount we can both manage, and means we're both moving a bit.

I've also picked up a Daily Yoga app for my phone. I've started doing ten minutes of yoga per day, just at the beginner's level. (I'll skip the yoga on days I go to hydrotherapy.) Again, even if I never get past the beginner's level, it's still a little bit of exercise, and helping to get my stiff joints moving. I do notice some ominous crunching and cracking sounds, but I'm not really pushing myself.

Order out of chaos: my lounge room now.(Yes, we had help.)

I'm also back to watching what I eat. For a couple of weeks my son and I lived on take-away while packing and organising things. It was so good to eat real food again. Cooking my own, healthy, meals is not only better physically, it also means I'm enjoying my food.

And, I'm working on a routine to do about 20 minutes of housework each day, so that it never builds up to an amount I can't handle. It helps that, unlike the last house, this flat is cool enough that I can do housework without risking heat exhaustion. It also helps that it's much smaller, so there is less to keep clean. It's so nice that I enjoy spending whole days at home. I used to be desperate to go to air-conditioned places and get out of the old house.

I'm less worried about money because I can actually afford to pay the rent here. That means I am even going to be able to get my financial situation back to a more healthy position. I'm working on that now.

Today, I'm getting back to writing and using the tens machine (I do both at the same time.) And, I'm getting back to my daily prayer time.

Next month, I can start adding preaching once a month into my schedule. I don't know whether I'll be able to go back to paid employment. My GP has said working 30% time was clearly too much, and if I'm going back, it will have to be no more than 20% time. I'm hesitant to ask to do that, for fear I will let everyone down again. I'm leaning towards just doing what I'm able, on a voluntary basis, at least for a while, until I'm sure how much work I can handle, while still putting a high priority on my care for myself.

Other blogs and books by the same author

Blogs

Patchwork

Patchwork is an anthology of short stories and poems by author and blogger Iris Carden. In this volume, you will deal with the aftermath of a dog bite in Bad Moon Rising, spend a sleepless night with The Possum in the Roof, and investigate a weird religious cult in The Time of Blood and Death. The print version of the book has a bonus story not in the eBook version.

Beside Still Waters

A book of sermons and brief reflections on Christian Scripture, by Rev Iris Carden. There is no specific order to the items in the book, they are intended to each be a "surprise" in that they are not related to the items around them. It is hoped that in each, the reader will find something new or special, or unexpected, a message from God. Rev Iris Carden has a Master's Degree in Theology and more than 10 years of experience as a Christian minister.

Cat-it-orial

Mr Bumpy is such a talented cat, he even runs his own website: mrbumpycat.com. He is a blogger, and a very bad cat. His favourite hobby is world domination. His next hobby is harassing the humans and other animals he shares a home with. In this book, you can see the world through the eyes of a megalomanicat, and some of the other animals who share his home.

Group Meeting

(Novella) In a facility for people recovering from mental illness: a group of people with sinister pasts starts to be visited by a girl who doesn't exist.

Karlee

Failing author Terry Dixon is made an offer that seems unbelievable. He can have all of his problems solved, have everything he has ever wanted, for a price. The price is something that "will not be too difficult" for him to pay - but it is not specified what it actually will be. With bills mounting up and a deadline looming, Terry agrees to a deal with something he knows nothing about.

About the Author

Iris Carden is a retired Uniting Church minister and former journalist. Lupus forced her to stop working. On good days she writes.

I've been nominated. Please endorse me.

This is an Australian Blog

Some of the issues, resources, information discussed may not be relevant to overseas readers. (Some things may not even be relevant outside of Queensland.)

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My email address is iris@sometimesitislupus.com

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You can add your personal memorial messages in memory of lupies who have fallen in the battle against the wolf in the comments section of this page. Or you can email them to iris@sometimesitislupus.com with the subject heading "In Memorium".

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If you are a lupus warrior who has something to say, please email iris@sometimesitislupus.com with the subject heading "Warriors' Wall". Include in the email, a nice clear photo of you, your first name, year diagnosed, country, and what you want to tell the world about lupus. (Up to 100 words.)

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